On Friday, HR 4260, a bill to improve the Ryan White CARE Act, the nation’s premier AIDS program, was introduced in Congress. The bill was a result of the efforts of mobilized stakeholders and constituents from 12 states for meetings with over 50 congressional offices this week, to highlight the need for action.
WASHINGTON (March 16, 2014) The AIDS Healthcare Foundation (AHF), the largest global AIDS organization, joined a number of other organizations including HIV/AIDS medical providers, social service organizations, municipalities and local representatives as well as community churches in praising the introduction of the “Ryan White Patient Equity and Choice Act” (HR 4260), a bill to make needed improvement to the Ryan White Comprehensive AIDS Resource Emergency Act (RWCA) program to ensure that funding allocations are evidenced based, and that funding targets interventions that get people in to care and help them stay there. The new bill, introduced in Congress late Friday, is authored and sponsored by Renee Ellmers, (R, NC, 2nd District) and co-sponsored by Eddie Bernice-Johnson (D, TX, 30th District) and Bennie Thompson, (D, MS, 2nd District).
Upon the introduction of the bill, Congresswoman Ellmers (R, NC, 2nd District), a member of the House Health subcommittee that oversees Ryan White, made the following statement:
“I’m pleased to have worked with the North Carolina HIV community to address some of the problems associated with HIV funding inequities occurring between the states. That’s why I’m proud to introduce a new bill today – The Ryan White Patient Equity and Choice Act – to require HHS to study their formula and address the problems facing millions of HIV patients across the country. As a nurse, I have seen firsthand the pain and anxiety that an HIV-positive diagnosis can cause and look forward to seeing this bill quickly move through the House of Representatives,” said the Congresswoman.
“On behalf of our nationwide network of HIV community advocates and allies, AHF is thrilled to support the introduction of the Ryan White Patient Equity and Choice Act, said Michael Weinstein, President of AIDS Healthcare Foundation. “The leadership shown by Congresswoman Ellmers in introducing this bill, along with that of Congressman Thompson and Congresswoman Bernice Johnson, clearly demonstrates that Congress cares about the future of the Ryan White program and our ability to stop the spread of HIV/AIDS. This bill will help begin to ensure funding follows the HIV epidemic where it is growing, and that Ryan White is better focused on ensuring more people get the care they need to stay healthy and become noninfectious to others.”
Since last November, AHF and its partners have helped set the stage for Congressional action of the lifesaving US AIDS program by spearheading a bipartisan effort to educate legislators and congressional staff on suggested changes in the new bill. Over the past week, stakeholders and constituents from 12 states for meetings with over 50 congressional offices. In a letter signed by over 54 HIV medical providers, social service organizations, municipalities and local representatives as well as community churches, supporters urged members of congress to “align Ryan White with new knowledge on the best approaches to control the epidemic. Most critically, we must ensure the program is focused on eliminating gaps in the number of people with HIV who are knowledgeable of their status, linked to and retained in care, and adherent to their prescribed medications – as illustrated by the “HIV care continuum.””
The letter also sates that, “Eliminating gaps in care has become even more important as we have learned more about the impact of treatment on preventing the spread of the HIV. New studies have shown that the less of the virus a person has in him, the harder it is to transmit that virus and infect others. In fact, people with HIV on successful treatment are 100% non-infectious.”
“This bill addresses gaps in HIV care that are not filled by other providers in our health care system,” said Tim Boyd, AHF Director of Domestic Policy. “Providers such as Medicaid and private insurance do not cover services like HIV care retention services, HIV medical case management, and treatment adherence services – things that are essential to saving lives and stopping the spread of HIV. Moreover, these providers do not have the HIV expertise of the CARE Act.”
“This year I celebrated 25 years of living with this virus. At that time I was diagnosed there was no true treatment. At that time I was given 3 months to live. I was a young man planning my funeral. I am still here 25 years later and not just here but thriving is because Congress responded to this epidemic and helped me get into care and start treatment,” said Art Jackson, an HIV Advocate from North Carolina who came to Washington D.C. to support the new bill. “With this bill we can help ensure that thousands more like me in areas where the epidemic is growing can get the HIV care they need. By doing this, we will not only be savings lives, but we can reverse the spread of HIV,” said Geneva Galloway, a North Carolina HIV advocate.
“I am proud to see Mississippi supporting this bill”, said Luke Versher, an advocate from Jackson, Mississippi. “The HIV epidemic is destroying our communities and I came here to tell Congress that we cannot afford to wait any longer to ensure that Ryan White prioritizes access to care in Mississippi.”
“I have heard from many groups that now is not the time for Congress to make changes to Ryan White. To me, this is just defending the status quo in which people with HIV are not in care and new infections are not going down,” said Ed Jones, an HIV advocate from Texas. “The status quo harms Texas and many other states because it means funding is not following the epidemic and that there will be a lack of focus on the HIV care continuum.”
About The Ryan White Patient Equity and Choice Act:
The Act ensures services that directly address the HIV continuum of care are prioritized
- Linkage, retention, and treatment adherence services are clearly defined as “Core Medical Services”.
- Incentives grantees to prioritize the provision of continuum services in their community.
- Ensures that care is coordinated and led by experienced providers.
The Act helps ensure that areas where the epidemic is growing will have the necessary resources to eliminate gaps in the continuum of care
- HRSA is required to examine the level of funding equity between states and eligible areas receiving Ryan White funding, and submit a plan to Congress to ensure that funding does not vary more than 5 percent per person with HIV among each state and area.
The Act supports better treatment adherence and health outcomes by promoting patient-centered care and choice
- Establishes a Special Project of National Significance (SPNS) that will develop a model of patient-centered care. As part of this effort, grantees will assess the extent to which patient centered care is incorporated into in their area, and HRSA will examine how to incorporate patient-centered care throughout the Ryan White program.
- Requires states to implement an ADAP pharmacy network that includes specialty pharmacies that focus on the HIV population. In addition, it protects privacy and supports better adherence by enabling patients to choose whether or not they want to use mail-order pharmacy services.